title: Progression, symptoms and psychosocial concerns among those severely affected by multiple sclerosis: a mixed-methods cross-sectional study of Black Caribbean and White British people.
abstract: OBJECTIVE
  Multiple sclerosis is now more common among minority ethnic groups in the UK but little is known about their experiences, especially in advanced stages. We examine disease progression, symptoms and psychosocial concerns among Black Caribbean (BC) and White British (WB) people severely affected by MS.
  
  
  METHODS
  Mixed methods study of 43 BC and 43 WB people with MS (PwMS) with an Expanded Disability Status Scale (EDSS) ≥6 involving data from in clinical records, face-to-face structured interviews and a nested-qualitative component. Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) were calculated. To control for selection bias, propensity scores were derived for each patient and adjusted for in the comparative statistical analysis; qualitative data were analysed using the framework approach.
  
  
  RESULTS
  Median EDSS for both groups was (6.5; range: 6.0-9.0). Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) based on neurological assessment of current EDSS scores identified BC PwMS were more likely to have aggressive disease (PI F = 4.04, p = 0.048, MSSS F = 10.30, p<0.001). Patients' reports of the time required to reach levels of functional decline equivalent to different EDSS levels varied by group; EDSS 4: BC 2.7 years v/s WB 10.2 years (U = 258.50, p = 0.013), EDSS 6∶6.1 years BC v/s WB 12.7 years (U = 535.500, p = 0.011), EDSS 8: BC 8.7 years v/s WB 10.2 years. Both groups reported high symptom burden. BC PwMS were more cognitively impaired than WB PwMS (F = 9.65, p = 0.003). Thematic analysis of qualitative interviews provides correspondence with quantitative findings; more BC than WB PwMS referred to feelings of extreme frustration and unresolved loss/confusion associated with their rapidly advancing disease. The interviews also reveal the centrality, meanings and impact of common MS-related symptoms.
  
  
  CONCLUSIONS
  Delays in diagnosis should be avoided and more frequent reviews may be justified by healthcare services. Culturally acceptable interventions to better support people who perceive MS as an assault on identity should be developed to help them achieve normalisation and enhance self-identity.
authors.affiliation: King's College London, School of Medicine, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, United Kingdom.
authors.forename: Jonathan
authors.initials: J
authors.lastname: Koffman
authors.forename: Wei
authors.initials: W
authors.lastname: Gao
authors.forename: Cassie
authors.initials: C
authors.lastname: Goddard
authors.forename: Rachel
authors.initials: R
authors.lastname: Burman
authors.forename: Diana
authors.initials: D
authors.lastname: Jackson
authors.forename: Pauline
authors.initials: P
authors.lastname: Shaw
authors.forename: Fiona
authors.initials: F
authors.lastname: Barnes
authors.forename: Eli
authors.initials: E
authors.lastname: Silber
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D044383:Black People / Q000523:psychology*; D017691:Caribbean Region / Q000453:epidemiology / Q000208:ethnology; D003430:Cross-Sectional Studies; D018450:Disease Progression; D004739:England / Q000453:epidemiology / Q000208:ethnology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000453:epidemiology / Q000208:ethnology* / Q000523:psychology*; D044465:White People / Q000523:psychology*